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On March 14, 2013 we received a prenatal diagnosis that Cop had Down syndrome.


March. You know the old adage that March comes in like a lion and out like a lamb? So does a Down syndrome diagnosis. Believe me when I say we were scared and sad and grieving and feeling all the other feelings we were supposed to feel. When I reread the posts I wrote during that time my heart hurts for us, because we felt lost and helpless. We had pretty decent doctors and staff, though I know that’s not often the case, and I hear so many horror stories from parents about the awfully insensitive things people heard from their care providers when they received their diagnosis. I don’t know if I ever went into the details of our story, but I will today.


I’ve told you before about our false positive with Henry. We received a darn high risk from the 16 week quad screen, but he was our miracle infertility baby and there was no way we were risking an amnio, no matter how small the risk, so we waited it out and when he was born he was perfectly healthy and typical. And beautiful, but that’s neither here nor there. When I got pregnant a second time, we knew we wouldn’t be terminating if the baby did have Down syndrome, because we worked through that conversation when I was pregnant with Hen, and we didn’t want to go through all the false positive drama again so we skipped genetic testing altogether.

And fate laughs.

At our anatomy scan they saw a few things that raised red flags. Soft markers, club foot, and maybe something intangible that they’ve never really admitted to, but whatever it was, when we were referred to a MFM he looked me in the eye and said “get the test.” Prenatal testing had come a long way in just 3 years, so we did.

I was at work, it was about 1 pm when the phone rang. I recognized the number and the pit that had been in my stomach for the last 2 weeks since they took the blood for the test tightened. I answered the phone and as soon as I heard the counselors voice I knew what she was about to say. To her credit, she didn’t sound like she was delivering bad news, but she sounded like she knew it was going to rock our world. She didn’t say “I’m sorry” and that was a huge gift, all she said was “the results of your test are back, and your baby has down syndrome”.

I remember exactly what I said in reply… “no shit?”

Oozing with gravitas and eloquence, no?

I hung up the phone, packed my stuff up and went home to be with Josh. We spent the rest of the afternoon eating Oreos and watching those amazing videos on YouTube that people will now send me for the rest of my life. The ones that are so happy but make you cry because they are so touching? I love them. We needed them that day, because that is how we needed to start our journey, laughing.

We’d already told out genetic counselor that we weren’t interested in termination, so she didn’t bring it up when we went in for our follow up appointment, but we were aware that it was an option. Instead she’d pulled lots of info and resources for us. Told us about a thousand times how “awesome” we were and we sort of felt then like we feel now. I mean, we are awesome, but not because our kid has Down syndrome.

The rest of the pregnancy and the first few months of Cop’s life were jam packed with doctors appointments and follow ups and now we have therapy at least once a week… but the extra appointments, you get used to those really quickly. You get used to everything really quickly.

And here’s the “out like a lamb” part. I thought then, that March 14 would be an anniversary of mourning forever. But you know what? I completely forgot about it. I was too busy snuggling my baby and doing a puzzle with my toddler and living my life that I didn’t even remember. And more than forgetting it, I think if I had remembered, I might have celebrated. Because I’m so happy that Down Syndrome is a part of our lives now. You might not understand that, but I mean it.

So we’re going to celebrate Down syndrome here for the rest of the week, counting down to World Down syndrome Day on Friday. I hope you join us.